EPISODE 237

[0:00:01] MD: For this gratitude entry, I have to give a shout-out that I am grateful for Erin. I know that she listens to these. She has no idea that I snuck this one in here, but I just have to tell you, thank you. The last two and a half months have been bonkers. I mean, balls to the wall wide open with the move from South Carolina to Virginia. Some days I didn't know if I was coming, and I was completely and totally overwhelmed. I felt like I was failing as a clinician, a wife, a mom because it was just so much to do that all had to be done and our pressing due dates for the articles we're writing and the projects that we've said yes to, and the volunteer work.

Every time I felt scattershot and crumbly, you just send a text, you call, you say, ÒLet me FaceTime, the boys,Ó and you pull me down from the ceiling. Erin, thank you for being you and letting me be a vulnerable hot mess during this season oh change because holy crap, we came through it, and I am so grateful for the joy that we have continue to pour out. So dear friend, thank you.

[INTRODUCTION]

[0:01:45] MD: Hi, folks, and welcome to First Bite: Fed, Fun and Functional. A speech therapy podcast sponsored by speechtherapypd.com. I am your host on this nerd venture, Michelle Dawson, MS, CCC-SLP, CLC, the All-Things PFDs SLP. I am a colleague in the trenches of home health, early intervention right there with you. I run my own private practice, Heartwood Speech Therapy, here in Columbia, South Carolina. I guest lecture nationwide on best practices for early intervention for the medically complex graduates. First BiteÕs mission is short and sweet, to bring the light, hope, knowledge and joy to the pediatric clinician, parent, or advocate.

[0:02:32] EF: By way of a nerdy conversation, so there's plenty of laughter, too.

[0:02:36] MD: In this podcast, we cover everything from AAC to breastfeeding.

[0:02:41] EF: Ethics on how to run a private practice.

[0:02:43] MD: Pediatric dysphagia to clinical supervision.

[0:02:46] EF: And all other topics in the world of pediatric speech pathology. Our goal is to bring evidence-based practice straight to you by interviewing subject matter experts.

[0:02:56] MD: To break down the communication barriers so that we can access the knowledge of their fields.

[0:03:02] EF: Or, as a close friend says, ÒTo build the bridge.Ó

[0:03:05] MD: By bringing other professionals and experts in our field together, we hope to spark advocacy, joy and passion for continuing to grow and advance care for our little ones.

[0:03:16] EF: Every fourth episode, I join them. I'm Erin Forward, MSP, CCC-SLP, the Yankee by way of Rochester New York transplant who actually inspired this journey. I bring a different perspective, that of a new-ish clinician with experience in early intervention, pediatric acute care and non-profit pediatric outpatient settings.

[0:03:37] MD: Sit back, relax and watch out for all hearth growth and enjoy this geeky gig brought to you by speechtherapypd.com.

[EPISODE]

[0:03:51] MD: Hi, everybody. We are live. I am coming down from a bug panic attack. There's that, ÒHowÕs Nashville, hon?Ó

[0:04:01] EF: ItÕs good.

[0:04:02] MD: Yeah. Good morning, good morning. Wait, technically after Ð well, it's not technically afternoon. We have two minutes before it's afternoon. Knowing that you're coming next weekend, I was like, the path has to be clean because I know you don't like snakes and bugs. I was like, also, the boys are so excited that you're coming to visit next weekend. They can't stand themselves. Even Christian's like, ÒHey, I could pick Erin at the Charlottesville airport. Just let me know.Ó

Erin, he has planned a family outing for Saturday night, the Shakespeare Theater in town. It's the old-world style Shakespeare theater, where it's actually built to look like it did in the 1500s, as a wine tasting beforehand. He's getting the three of us tickets for the wine tasting and the kids tickets for soda pop tasting, and weÕll go see the play.

[0:05:00] EF: Oh, my gosh. I love it.

[0:05:03] MD: Yes. Okay. In other news, Erin went away to Nashville for a girlsÕ weekend. Hence, her recording from her car, because you need a girlsÕ weekend every once in a while. That's where we are in the world. We have a lot of ground to cover. Also, Erin and I have some exciting news on a new thing that we're setting up. we've already had participants sign up for it. Starting next month, we'll be hosting a research Wednesday on our Instagram live account. Erin and I have watched the world of social media.

Honestly, I have reservations with some of the information that has been provided and that it doesn't always align with the true researcherÕs methodology and research that's being presented via dance reels, or cute posts, or what have you tick of the talks. We decided to do it different. We are going to start bringing the actual researchers to y'all as another way in our attempt to expedite research to practice, which I haven't seen done before. Erin hasn't seen done before. This is us attempting to put the researchers directly accessible to y'all. Just like all things on First Bite, it's not just pediatric feeding disorder. We also cover AAC and literacy and things that are pertinent to us.

Dr. Kelly Farquharson, who is the ASHA Convention Chair for Boston this year, has already signed up. Dr. Amy Delaney, who runs Pediatric Feeding Lab out of Marquette University, who has so much research on typical developmental norms for geo intake. That's getting ready to hit the press this year is signing. She's already signed up. Dr. Jean Marshall from Australia will be coming on. I mean, she's done a ton with teletherapy and body-of-life parent-caregiver questionnaires. I mean, just amongst a few.

Head over to our First Bite account on Instagram to find out when Ð the folks will be coming on, but it'll be Wednesday nights at 8 p.m. Eastern standard time. Wait, Erin, was it 8 or 7 p.m.?

[0:07:27] EF: I forgot.

[0:07:29] MD: I think it was 8.00. Anyhow, again, it's our attempt to give the researchers an opportunity to tell you about what it is that they're finding and how that actually impacts our clinical practice without the message getting muddied in the middle. That's my PC version of that. Huzzah.

Okay. Today is Erin, and I's first episode for Dysphagia Awareness Month. If you look at the learning adjectives for today, one of the learning objectives was our role in diagnosing pedes dysphagia and pediatric feeding disorder. Because once the new ICD-10 code came out for PFD, there was a lot of questions as to whether or not an SLP can diagnose PFD. That's where for reference, please go back to the ASHA super bill for speech-language pathologists, which has on there our diagnostic code of 92610, as well as our ASHA code of ethics.

Use those as your compass rose, because what you'll find is that pathologist part, it's our job to diagnose. Giving that diagnosis of pediatric feeding disorder is 100% within our scope of practice. Okay, so to the naysayers that are like, ÒYes, but we can't diagnose the medical. We can't diagnose the nutrition. We can't diagnose the psychosocial piece. Those fall outside of our scope of practice.Ó Dysphagia, if it truly is dysphagia, is within our scope of practice to diagnose. Remember, we can't diagnose oropharyngeal, esophageal, pharyngeal or the esophageal stages of dysphagia. We can only diagnose the oral unless we have instrumental on instrumental; you can diagnose the others.

We have the ability to acknowledge the signs and symptoms that we're seeing under the medical component and indicate, hey, patients presenting with signs and symptoms of a rash that could be congruent with a food allergen, or patients presenting with signs and symptoms of constipation characterized by only having a bowel movement once every three to five days, or whatever the sign and symptoms are. Then you can explain; please refer to this specialist.

Under the nutrition, patient has the limited variety in intake or limited volume in intake. Please consider our referral to a registered dietician. For psychosocial patient and or their caregiver representing with signs and symptoms of this, this, and this. Please consider a referral to a psychologist, counselor, the Power of Two program from Feeding Matters. All of that is within our scope of practice to red flag and make a referral request from the pediatrician or whoever the referral source is. Dog agrees as well.

Then, our bread and butter is analyzing that feeding skill. We can still make a diagnosis of PFD as is outlined within our code of ethics. If you're getting pushed back in your place of employment on, but we can't diagnose this, because there's three domains that are outside of our scope, you can and you just justify what it is that you're seeing and why at that moment you have to pull an additional interprofessional practice partnership. This is something that's very near and dear to my heart is that we have to take ownership over this because the only other and IPP partners that have an overlap in scope of practice on this are OTs. OTs are the only other ones that can diagnose this.

I mean, a pediatrician can slap a label on this, but they don't understand what it is that they're truly seeing. I reference back to past episodes and collaborations with Dr. Tessa Gonzalez when she explains the pediatricianÕs scope of practice and their basic exposure knowledge and experiences with PFD and dysphagia as part of their residencies and core academic curriculum. 

That was on my soul. How are you, Erin?

[0:11:56] EF: I'm good. Well, I think people, the concern is, can I diagnose PFD if the other domains haven't been assessed, is the question that I get a lot in regards to that. That's where I think the language gets muddy when you look at ASHA, because, I mean, they don't love to give a straight answer on things because it is open also to your interpretation, which I totally understand. Technically, my understanding is if it's in one domain, it's still a PFD, so they have a feeding skill issue. Even if we don't know yet about the other domains, it would still be considered a PFD.

[0:12:44] MD: Exactly. Yes. If you're seeing signs and symptoms of dysphagia, dysphagia falls within that medical component because that's a medical diagnosis. I mean, it's a diagnosis that we can give, but it would be that medical piece. All of this is within our scope of practice. We reference you back to the [inaudible 13:08] et al. article for the position statement from 2019. That can be found readily available. It's a consensus PFD diagnosis statement. That can be found directly on the Feeding Matters website. If you don't have access to it, I'll see if we can get it hyperlinked in the show notes that you should have access to.

If you're having a hard sell on this, whether in an outpatient clinic or in home health, this is an opportunity to us really embrace in the interprofessional education piece and talk to whoever is giving me the pushback and give them those resources because we have to take ownership over our skill set and what we're bringing to the table. Okay, I think we beat that one down. That one's good to go.

[0:13:58] EF: Mm-hmm.

[0:14:01] MD: Yes. I was thinking about this the entire time. I was breaking all the sticks off the path, and I went out there, and I went through an entire thing of weed killer, the heavy-duty weed killer. The more I was spraying, I was, ÒOh, yeah. We got to bring about that. Oh, yeah, we have to talk about that.Ó I even killed the weeds for you, just so you know, so you can walk up. I'm so excited that you're coming home. Oh, my God. Okay.

The case study that we picked for today was to talk specifically about Wolf-Hirschhorn syndrome. While this has a relatively lower prevalence of occurrence, it's still a syndrome that you may encounter, and it has some pretty unique comorbidities and shortened life expectancy. It's one of those that when you're looking at the PFD diagnosis, you're going to probably hit all four domains. The psychosocial piece, especially for the caregiver. I thought that this would be a good case study analogy.

Also, Erin and I have both had a couple of patients that have had Wolf-Hirschhorn. Wolf-Hirschhorn has their own Ð one of my former caregivers, they have wolf hats, which is cool. They have their own entire Facebook page, non-profit set up for advancement and care, some really catchy logos. We recommend that you use them as a resource. I'll pull up their link in a second. Also, the National Institute of Health, the rare diseases, that's another great resource.

Now, on the receiving end of a referral, oftentimes, you're not necessarily going to get a lot of information. You might get a script eval, and treat dysphagia. But you have to make sure that when you're going to analyze and learn more about a diagnosis or disorder, go through and give the C.R.A.P. test. It's an actual Ð Google the C.R.A.P. test. It's funny. It's not actually about poop. I love talking about poop. The C.R.A.P. test actually analyzes the validity of what resource you're using to see, ÒHey, is this legit or not?Ó The NIH website for Rare Diseases and the Wolf Support Group website is fantastic.

The onus is on the speech pathologist to actually figure out what could be coming down the road for a trajectory when they go to make goals for PFD and dysphagia, okay. In order for us to make those either 90-day goals in a clinic setting, or six-month goals adhering to the IFSP, or a annual goal according to an IAP, we have to truly understand what the etiology is and what the potential comorbidities are, as well as analyzing what medications are they on.

With little ones that have Wolf-HirschhornÕs, oftentimes you'll find that they end up having to take seizure medications, because seizures are a prevalent comorbidity. Unfortunately, the seizure medications can cause, amongst a litany of things, xerostomia, or dry mouth, constipation, delayed GI motility, delayed gastric emptying. They can cause diminished hunger cues. They can cause lethargy or just extreme fatigue and tiredness. You'll find that this happens about 30 to 45 minutes after administration and can last up to, especially, that extreme lethargy piece for an hour and a half to two hours after that medicine hits their system. Why?

The why is those medications sedate the nervous system. Their whole purpose is to tell the electrical system and the body to ÔshhÕ, for the purpose of not triggering seizures, but the vagus nerve as part of the Ð when it branches into the GI tract, turns into the enteric nervous system, specifically the nervous system of the GI tract, and it also gets caught in the crossfires. That's going to shush as well. Now your task was working with the kid that has pediatric feeding and/or swallowing disorder, dysphagia, and their nervous system has been shushed, right?

You want to write your goals according to what their seizure prognosis is, and tying your therapeutic interventions and the delivery of oral P.O. when they're awake, alert, and oriented and not, for lack of a better phrase, snowed. A lot of opinions today. I almost lost one of my babies with Wolf-Hirschhorn. This is a topic near and dear to my heart because the baby ended up developing Ð our baby, you had her too. She ended up developing a brain tumor. This is a tough one. 

Okay. Erin, what were your experiences working with a little one that has Wolf-Hirschhorn?

[0:19:26] EF: I know. I know I'm trying to remember because it's been a couple. Because you and I shared. But I think something to think about with the populations that have so many comorbidities is this is why IPP is so important, because we can't go in with this separate expectation. I think feeding becomes Ð we have these weird expectations for feeding that we don't have, I feel like, for other ADLs, because we feel like feeding occurs Ð feeding is all-encompassing of body systems and motor movements and alert state.

You have to take into account all of these other aspects of their medical diagnoses and their presentation in order to set realistic goals. You can't just set goals based on the next step of where they need to be, whether it's advancing texture, or increasing volume, or working on a new modality, because it's so not linear for these patients, because it's so impacted by their seizures, or their GI status, or their neuro status. That's a hard conversation to have with caregivers. Instead of looking on this linear path of they're going to progress, we need to get in rhythm and sync with them and what works for them because it's not going to look the same. Oral motor skills are really difficult for the patient I worked with, especially with bottle feeding. Getting that latch was really difficult.

[0:21:23] MD: But that was driven by tone. This is not a tongue tie, or a lip tie, or anything like that, so don't think that we're talking about that. These patients with Wolf-Hirschhorn are known for having hypotonia, which permeates gross motor, fine motor, intellectual disability.

[0:21:43] EF: There were strategies that were used that we had to be careful with because a lot of people will recommend cheek support, chin support sometimes, which, if you're giving that cue, that tactile cue to just help understand that motor movement, that's one thing. If you're holding their mouth and forcing the bottle in, that's not honoring their cues and honoring their body.

The patient I worked with had a lot of sick Ð would get sick a lot. That also impacted because we would make some progress, and then we would get sick, and then we would have to work. What you see with a lot of patients that have a lot of medical comorbidities. Sickness is going to impact them more. It's going to seem like they're regressing, but really, you do have to continue to work back from maybe a couple steps backwards, which is okay. That's just where they are.

Very delayed and gross fine motor skills in general, like global developmental delays, which, again, is going to impact their feeding because if they're not doing it gross motor-wise, it's really difficult to do it fine motor-wise.

[0:22:56] MD: Oh, wait. Also, they tend to be smaller. There is a separate trajectory for growth for these little ones. Because the prevalence is so low, like one in Ð I think, 50 to 80,000 is the prevalence across the country, because the prevalence is so low. Pediatricians may not be as familiar with this diagnosis.

[0:23:27] EF: One in 50,000.

[0:23:29] MD: One in 50,000. Thank you. Yes, but because of that level of frequency, they may not be familiar with that. If they are charting them on a typical growth curve, which was normed off of predominantly upper middle-class white families in the Northeast and is not indicative of the rest of the United States, but that's a conversation for a different day. If they're getting charted on that, the parents are perpetually going to feel like they're failing, even before they begin, because the kidÕs just not growing on the growth curve. They have to have their own growth curve, which may not be indicative of how nourished their body really is. Go back to your CMP and check that.

[0:24:18] EF: It's a very distinct facial feature, as you'll see in Wolf-Hirschhorn. Very wide-set eyes. They have a pretty flat nasal bridge, too, you'll see. 

[0:24:31] MD: Is it called like the Greco, Roman-Greco helmet, or that's what it's described as? If you're a nerd, a history nerd, then you'll remember back in the day, there was a Greco-Roman helmet that had just Ð if you ever saw, ÒWe are Sparta,Ó then you'll know the helmet that I'm talking about. Or Alexander with Brad Pitt, they have the helmet features, and it looks like that. But I like we are Sparta. That's a good movie.

[0:25:05] EF: What else? I'm trying to think of other things that were very distinct.

[0:25:10] MD: The low threshold for seizures kicking in. Our little ones would have febrile seizures, and I'm talking if their temperature crossed 99.9, seizures would kick in. It is incredibly frequent that these children will require a feeding tube.

[0:25:31] EF: Growth problems are huge. Yeah.

[0:25:36] MD: Yes. Because they have the low tone at baseline, and we're not going to fix the tone here, there is increased work of breathing and fatigue with drinking everything through the formula orally or breastfeeding and getting enough nourishment. Oftentimes, they end up requiring a feeding tube for quality of life and for quantity of the feed. Even if they don't end up developing dysphagia because of the seizures or dysphagia because of the nervous system damages, or paralysis, or paresis.

If this diagnosis comes across your caseload, or if you have a diagnosis that's similar in complexity, just prep that feeding tubes are your friends. They're not your enemies. You can explain it to the families, ÒHey, we may need to consider a feeding tube,Ó but that lets us work on joyful meal times, that allows us to work on the quality of the meal, and y'all get to enjoy eating with your little ones, as opposed to constantly counting the calories and volumes, and that's huge.

[0:26:59] EF: Yeah. I think it is important to start that conversation early because I think what ends up happening for parents is that feeding tube feels like a failure. But you wouldn't expect a child that has quadriplegic CP to not be given access to a wheelchair or be given access to other supports. You have to think about it in the way of this is part of their diagnosis. This is part of some Ð and it doesn't mean that every child with Wolf-Hirschhorn is going to need a feeding tube. Instead of a, this is a failure because we need a feeding tube, this is a support that your child might need and that's okay. That's why it's important to dive into holistically, what you're looking at. Say, it's not Wolf-Hirschhorn. Say, it's a different genetic diagnosis, to go in and look at what might Ð

I think it's a balance of what might be, what might happen, but you don't want to go in with too many expectations for what they're going to present us. Have this background information, but also have the understanding that I'm going to look at this child as an individual child. I'm going to look at how they present and what signs I'm noticing as well because every child is different. How do we have the background knowledge and come in with an open mind, I think is really important and presuming competence because I've seen kids do things I never thought they could do, but you also have to prep the parent for.

I think they do this in the NICU a lot, which a lot of parents will come post-NICU and be like, ÒThey told me he wasn't going to walk. They told me he wasn't going to talk.Ó I don't always love exactly how it's presented, but they're trying to prepare parents for what the possibilities might be, because if they don't say it, then it could become more of a surprise, and it could make the parent not seek resources for when they're noticing these things. Because we are getting more and more children, we work with who have diagnoses that no one's heard of, that have no research behind them, that we don't have this type of information for. You are going to have instances where you go in and you see a child, and you won't have any idea how they're going to present. That's okay, but then you talk to the physician, you reach out to the pediatrician, you do any research you can, and then you assess the child holistically as well because that's going to give you information on their overall meeting.

[0:29:46] MD: Yes. Olivia shared that she Ð this is the same approach that she takes when engaging with AACs and having that conversation there. Yes, okay. Who here has had those conversations, those critical conversations with caregivers and where do you feel you struggled with having the conversation for a feeding tube, or what wording have you used that you're like, ÒOh, my God. This clicked. This helps them understand we're not failing; it's just, it's a tool.Ó Does anybody want to share? Because I know how to unmute, and we'd love to have you all chime in. Olivia, do you want to share? Yay, okay.

[0:30:32] OLIVIA: Hi, can you hear me?

[0:30:34] MD: Yes, hi.

[0:30:35] OLIVIA: Yeah. I think my focus, because I've worked more in schools, has been around AAC, but I've been trying to do some school-based limited swallowing assessments with our students who have that need and figure out if they need to be referred to a medical SLP or not. Some kind of, I guess, learning more about that process as I go and as I'm doing more and more continuing ed, because the bulk of that was grad school and my training years ago. Since then, has been more CEUs to get me Ð keep me updated on that stuff.

For AAC, I think, again, I work more with older students, and I think parents do see it as a failure when you're recommending an AAC device sometimes, depending on their exposure to that concept. Coming in and just being like, well, just because we're doing this doesn't mean that your studentÕs never going to talk. If anything, it may help them be able to eventually talk more, which I know is a little bit Ð I mean, I don't know as much about feeding tubes, but maybe, like you had mentioned, taking the pressure off of the feeding process may help the child in the long term and the family, because they can focus more on what they really need to be focusing on potentially, rather than like you said, calories and things like that.

With the AAC devices, I try to remind teens and families that this is a tool. Some people call it a crutch, which I don't love. I try to rephrase it as a tool, a tool; that's what it is. Just how we wouldn't Ð and you guys use this analogy, which is the one that I use where it's like, I wouldn't expect a student who couldn't walk to be able to walk on their own. They need a tool to be able to walk, whether that's a walker, whether that's a wheelchair, whatever they need to be able to move around. This AAC device is just helping them do that for some period of time. It may not be forever, but just to help them be able to do what they need to do. Again, I work with older students, so I think there is a little bit more of an open mind around it because they've tried other stuff, but yeah.

[0:32:46] MD: That's perfect.

[0:32:48] OLIVIA: Thanks.

[0:32:49] MD: Also, I love the eye roll when Erin was like, ÒYes, I feel that.Ó Because we get that. Okay. One, feel alleviated in your worries about the school diagnosis for swallowing because I know that the Journal of Speech-Language and Hearing Science for the schools is going to have an entire issue dedicated to PFD in the public schools after the first of next year.

[0:33:15] OLIVIA: Oh, perfect.

[0:33:18] MD: Right, right. Ultimately, perfectly timed. That's amazing. Oh, wait. Give credit where it's due. My girlfriend, Mary, out in Alaska, they just had an entire overhaul in the school district that she works on, and we got to get her booked on for the podcast on structures, how to get PFD and dysphagia in the entire Ð she's an anchorage to get it embedded within the school district in Alaska. She was like, ÒLook, if Alaska can do it, anybody can do it.Ó

[0:33:50] OLIVIA: That would be amazing. Yeah. Roughly right now, it feels like I'm the only one doing it. Of course, I am going in, and I don't feel like I have other SLPs in my district I can collaborate with on it. I definitely am appreciative of all of these webinars and things to collaborate with you guys. Yeah.

[0:34:12] MD: We just completed a peer-reviewed Ð We did a clinical swallow email template for PFD for the LEA specifically. I can send that to you for free if you want. Just message me.

[0:34:24] OLIVIA: Yeah, that'd be wonderful. Thank you.

[0:34:25] MD: Yeah. Perfect. It's michelle.dawson.slp@gmail. Send me an email. I can send that to you as soon as we're done here.

[0:34:34] OLIVIA: Perfect. I'll do that.

[0:34:35] MD: Yeah, perfect. Olivia, thank you for sharing. I love your analogy for AAC. It totally connects.

[0:34:41] OLIVIA: Thank you.

[0:34:45] EF: If we think about it, it's inherently ableist of us to expect children to communicate a certain way, or to eat a certain way. We have all this technology that's helping children survive. The fact that we also then don't expect that they may also need tools to live quality of life is frustrating. If, like you said, parents worry about, oh, they're going to use this feeding tube as a crutch, or oh, they're going to use this AAC device as a crutch. When we know that there's something to be said for that intonation and the vibrations that we use and the way that we can connect in that way. If that becomes motivating for the student or child, they're going to communicate more that way, if it's easier. They may not.

Then from a feeding perspective, if we build that psychosocial connection, make food enjoyable, then that's when they start to maybe want to. For some kids, food may not be enjoyable, and that's okay. Then we find other ways that they feel connected and have quality. Where I'm very passionate about giving children and caregivers more power, because they know and we have to start to trust the kids we work with more, because they know their bodies if we give them an opportunity to communicate that. When we step in taking away that ability to learn and ability to learn about our body.

That's an important thing to think about as well is what's authentic to this child, what authentic to how their body feels, and let's just listen to that first, as opposed to stepping in and saying, ÒHere's some strategies I know were going to work,Ó because we also know, like we're talking about today, there's very rare diagnoses that we don't know. Let's help try to figure out what their body needs.

[0:36:58] MD: Yes. Okay, wait. Olivia, before you go, I have one question, because when ErinÕs talking about the caregivers and the coaching and honoring it, you had an opportunity to work in the early childhood SPED classroom during mealtime, like when they serve lunches and stuff like that.

[0:37:15] OLIVIA: I actually work more in the high school, young adult population, so I havenÕt. Yeah. Years and years ago, IÕm trying to think back even to grad school, if I even got to observe. I don't think so. I think it was, yeah, just more during language time, they had me in there. That would be a great opportunity though, for sure.

[0:37:36] MD: Yeah. Because I have two thoughts. One, the power of AAC to help in feeding. The power of them to be able to communicate, especially for the Wolf-Hirschhorn diagnosis, where most of those children are non-speaking, because the nature of the disease, genetic mutation, but yes. Having AAC as a tool in PFD, talk about, I like it, I don't want it, that honors what Erin was talking about. If this is your love, I think AAC and feeding are so intimately intertwined. I want to do a research study where we analyze the kids typically developing peers from Ð make sure it's representative. What they ask for in the lunch line in the actual conversations they have during lunch, because I feel like, it's probably not all about food, but other stuff. I feel like, if we were to extrapolate that data and then marry it in with their children that are non-speaking, then it would allow them to participate, right?

[0:38:37] OLIVIA: Yeah. Oh, yeah.

[0:38:39] MD: Okay, there was a point there, but it's gone. I'm sorry, I've lost it.

[0:38:43] OLIVIA: I have observed them during lunch and brunch and things like that. I definitely agree. I feel like, that's one of the first things. If a student is very limited in what they're able to communicate, or showing intent to communicate, not saying that they don't have the intent, but just what they're showing the intent to communicate. Starting with, I like it and I don't like it is the first thing. A 100% with feeding, that just goes hand in hand. Yeah. We agree.

[0:39:11] MD: Yes. Thank you for coming on.

[0:39:13] OLIVIA: Of course.

[0:39:13] MD: Much appreciate it. Yay. Okay. There was another conversation, or comment from Cassandra. I've lost it now. Cassandra said something and now I can't pull it up. Wait, here it is. I would say something like, GI tube is something that is reversible and may help with progression of nutrition, strength and swallowing faster, while they're trying to get stronger. It'll alleviate some of the stress of PO intake and the amount. Yes, that's perfect. Cassandra, you hit it on the head. Cassandra, do you want to come on and talk about how you would phrase that conversation? Also, do you go by Cassandra? Do you go by Cassie? Now, I'm just curious. Oh, you go by Cassie. Cassie, do you want to come on and share it? Yes, no. You don't have to.

I'm all excited meeting people. This freaks my heart happy. Also, I haven't really talked to adults since we moved here, aside from my husband and immediate family. Really need adult interaction. Okay. All right. Erin, what else? Wait, do we Ð she said Ð

[0:40:30] EF: SheÕs like. Yeah. I think sheÕs like Ð 

[0:40:32] MD: SheÕs like, itÕs up to you. [inaudible. 0:40:34]. Perfect. Okay. Well, then, huzzah. Thank you, Cassie. Okay. What else do you want to get across about honoring choices and feeding, or the actual strategies? What strategies? You were talking about the cheek support. What other strategies have you used with little ones that help Wolf-Hirschhorn?

[0:40:54] EF: The cheek support, I'm always really cautious about, because you don't want to take away their cues of refusal, which you can do oftentimes with that. I tend to be cautious with how I use that. I would rather find a bottle that maybe more supports their oral structures than what they need. It was a lot of play with puree, helping that exploration, because we do also forget how much practice, typically developing children get with food and with the principles of motor learning.

If we're offering purees once a day, that's great. But we can't have the same expectation that they're going to develop those skills at the same rate that a developing child would. My little nephew is 10 months and he's eating all the things, but he had three meals a day of chewable solids by age nine months. Did I baby love eating is something that I'm very cautious about, so I let her do her thing? Then if she had any questions, she could ask me. Yeah, I was very focused on quality of life, what's going to be enjoyable for the child and the family. Because then you also Ð the purees are difficult, because when you transition to those, I think caregivers get very confused from a nutrition standpoint. Then the difficulty you also have, you don't have a feeding tube is it's harder to advance skills, because you're focused on calories.

If you're so focused on calories, I can't spend as much time working on purees and table foods, because at the beginning, they're not giving them that many calories. We have a feeding tube, we can get those calories in while being able to take time to work on skill building. All conversations, caregivers all the time, especially kids that maybe come to me with a feeding tube, is your focus volume, so we can work off the feeding tube? Or is your focus advancing skill and texture? We can work on both, but I want to know what your goal is as a caregiver and what's going to be more important for your life, because we can focus more on that.

[0:43:15] MD: Yes. Then aligning that goal with the child's prognosis and trajectory, which you do an excellent job at. Sometimes the caregiver comes and they're like, "I just want this," but their goal, it's unfortunately not realistic at that moment in time, maybe, or maybe ever given what the diagnosis is, which is where we have to work interprofessionally. Because it can't always just be the SLP steering that conversation of Ð and we'll get to the IPP part, but two thoughts for treatment. One, are we assessing what their preferred flavors are? That's something that we all have our own normal, like this is what you customarily eat for breakfast. I've been on a cottage cheese cake. I have eaten cottage cheese for breakfast, probably four mornings a week for the last couple of weeks. Before we moved here, it was always a fried egg with spinach and tomatoes, but I just enjoyed cottage cheese, and I donÕt know Ð

[0:44:22] EF: But how many times do you have a caregiver come in, not necessarily with a child with Wolf-Hirschhorn and say, ÒWell, they only want to eat this food,Ó and then they stop eating it?

[0:44:31] MD: Yes.

[0:44:32] EF: People do that. IÕll have the turkey sandwich for lunch for a couple of weeks. Then I'll decide that I want to have, I don't know, a salad. We do that naturally. Yet, we nitpick the kids that we work with in them doing those. That's, I think, a natural thing, especially for our gut, is we Ð it's comfortable to eat something. Then our gut says, ÒMm, I need some different microbiomes and some different bacteria.Ó

[0:45:03] MD: Yes. Okay. But this is, it's a food jag, and that's typical. If we food jag ourselves, we have to honor the kids food jagging, right? This is part of it. Also, my flavor choices, cottage cheese is salty. I like that salty flavor, right? a lot of our breakfast foods are sweet. When we're assessing and we're working with the caregivers, we need to assess. Part of our assessment for that feeding skill PFD domain should be, are they pursuing sweet, salt, sour, bitter, or umami? What are their preferred food choices? If that's what they naturally want more of, then let's support that, because you can have spaghetti for breakfast.

I mean, we have already taught the boys the power of leftover pizza for Saturday morning breakfast when they wake up earlier than us, because Bear woke up at 5.00 yesterday morning, because he knew he was going to spend a couple days with me, me and Poppy, which I don't know about y'all, but 5 a.m. on the weekend during summer vacation, that is Ð Bless BearÕs bottoms. Anywho, also he packed and can we just acknowledge that an eight-year-old thinking that they have [inaudible 0:46:23] vacation is not a thing. Oh, my God. That took an extra hour yesterday. We're fine. It's fine. Plus Bear.

Okay, but with respect to honoring their food choices and their preferred flavors, we can go far. The little one that I work with, with Wolf-Hirschhorn, one of her favorite foods in the history of foods was Chick-fil-A sauce. Okay, there is a boatload of calories in one little pack of a Chick-fil-A sauce. I will never forget, because they were the family that the dad would go to Chick-fil-A and get breakfast for him, his bride, and their older daughter. He would get her her own four-pack of the honey chicken biscuits and tater tots and Chick-fil-A sauce. He tossed it in a blender, pureed all, add water so that it would actually Ð otherwise, it was just too dry and you wouldn't get it through.

Then he would feed that to his daughter through her feeding tube. It was a real food blend, not to be confused with the product real food blends, but it was literally food that if she could eat by mouth, she would take it by mouth. But you know what? She would take that pureed blend and eat some of that off of a spoon by mouth, and she loved it. I mean, freaking devoured this stuff. It went through her feeding tube. That was her one of her favorite foods.

It brought the family happiness that she could eat what they were eating and it just wasn't one particular formula day in and day out. Get more buy-in for patients. Yes, Miriam, you're right. Getting across the life continuum, that statement needs to be shallowed from the mountaintop. Get more buy-in for patients on what food they want. Yes, absolutely. There's so much to be said.

Also, culturally. Because I've had patients that have gone for modifieds and they try to explain the puree applesauce and they're not accustomed to what applesauces. I mean, if you have a family who's like, rice is a common side, or could be the main dish with vegetables mixed in, then we need to have a conversation between the outpatient, or home health SLP and the SLP that's conducting the instrumental swallow eval with a caregiver. If we need an interpreter, bring the interpreter in on what foods to try that honor that familyÕs either religious restrictions, or preferred food choices and how we can actually capture that on an instrumental. Oh, my God. Erin and I just recorded Caroline Brindo and Dr. Steve Ð how do you say his last name?

[0:49:23] EF: Suresi.

[0:49:23] MD: Suresi. Yes, from Braco. Rhymes with Taco, that's how she told me to say it correctly, because I kept saying Ð like it Rabos. It's coming out in October and it's all about modified barium swallow studies and how they're now becoming more and more normed for pediatrics and actually, how the barium in, if you picked the wrong barium product, how it can influence the outcome of the swallow studies. That was a really good conversation.

Okay, but to get back to the point about the Chick-fil-A sauce, that opportunity honored their preferred food choices, but you can also have exposure and play within the LEA and you can do feeding therapy, because a lot of our early childhood special education classrooms, they do family style meal times where they sit around a little kidney table and they serve the kids the lunch. Even if the little one isn't able to consume what's being presented, just having them play housekeeping, or playing with the food, that's an opportunity to be a part of and not ostracized.

There's a way to make that fun and a positive learning experience, even for the typically developing children that may be partnered as part of those classrooms. That's another potential intervention strategy in addition to when they're little, honoring flavors of food choices, or not when they're little, when they're really little, like Erin was talking about earlier, changing the bottle, changing the flow rate on the nipple so that it's a slower pace. Okay, so Erin, what inter-professional practice partners could you anticipate collaborating with in a little one's care that has Wolf?

[0:51:15] EF: Genetics, obviously.

[0:51:18] MD: Yes.

[0:51:20] EF: Probably GI. Probably neuro. Because of their facial features, you'd likely to have them see ENT as well, because you don't necessarily know how that's going to affect their breathing, and the low tone, just in general, oftentimes, they're at higher risk for laryngomalacia, or hypertrophy of the adenoids, because if they have low tone all around, it's also going to affect them their OTPT, which you're going to need to collaborate with if you want to provide the best care for them. I had this conversation with one of my co-workers, because I'm really lucky where I am right now to be in such a collaborative environment with the physicians that I work with.

I've found that the more you can collaborate, the less Ð I don't like the term conservative, because I don't feel like we should be conservative. I think that's how children grow. When we work with them, there's an approximate development. When you work holistically with a team, they can go so much further, because this isn't just my decision for feeding and your decision about what's happening airway-wise and your decision about what's happening with their feeding tube.

If we can work together, then we can make decisions together and have all of this information within the decision that we're making. I can't make a decision for a feeding tube. I can talk with the team about my concerns and that they might need an alternate means of nutrition. But I need the team to make that decision with my information in mind, their information in mind. OT, PTÕs information and how they are presenting holistically. The more you work on an island, the less you're going to have that ability to foster decisions that are more holistically informed.

[0:53:32] MD: Yes. Okay, wait. How many of y'all listening actually work in a rural setting, or in a setting where it's hard to get a robust team? Because that's a real concern.

[0:53:44] EF: Well, and what ends up happening, I think, is I mean, you and I talk, like when I was working in the area that was more rural, I would send my patients to a clinic somewhere where they could see multiple providers at once, so that they could have information and we could work together, when I wasn't able to collaborate as easily with the whole team.

[0:54:06] MD: Yeah. If you're in a setting where you can't quickly access a major medical IPP team, what does it look like? How could you potentially get there? Okay, so one, Feeding Matters has scholarships available to say it's really, really rural and the closest major instituteÕs a couple hours away, or the family doesn't have the financial needs to get there, they can apply for the scholarship through Feeding Matters and they'll help offset the cost of getting them there. Oftentimes, when they get the foot in the door, the Ronald McDonald House, it's a organization not to be confused with McDonald's food, but I think they might sponsor it. Ronald McDonald House has housing available for free for caregivers to stay at and it's attached with children's hospitals. There's restrictions, but they open their doors.

[0:55:02] EF: Yeah. I mean, I am starting this new program. We'll see a lot of kids that are at the Ð maybe had surgery and then they'll stay at the Ronald McDonald House for a couple weeks to make sure that everything goes okay with the surgery. Or are getting radiation treatment and need to come and stay. There's a lot of support there if you need. Because also, the thing I remind people is just like not every SLP is comfortable working with pediatric dysphagia. Not every GI works with children with genetic diagnoses as much. Not every neurologist works with Rhett syndrome, for example.

Oftentimes, when you have children with rare diagnoses, you think, ÒOh, well. They already saw GI,Ó but that GI may not be as comfortable with that diagnosis and different ways to support them, and that's okay. But then, how do we get them to someone that does and that does have that knowledge and understanding? Sometimes that may be going somewhere else.

[0:56:18] MD: Okay. If you haven't checked it out already, NASPGHAN, the North American Society for Pediatric GI, they have a podcast called Bowel Sounds. It's great. They have a ton of different co-hosts. Then the co-hosts will do a couple series where they interview a subject matter expert and then it rotates through. You're even getting different co-hosts as you listen through the podcast. They pick specific etiologies and each episode is dedicated to a unique GI etiology, which is just freaking amazing. They had a killer went on about EOE. There was one on back loss ball about cystic fibrosis in GI, which I thought was cool.

There's different ways to grow your inter-professional education and understanding about how just like Erin was talking about, the GIs have subject matter expertise and their weird little subsets just like, and may not be familiar to this.

[0:57:26] EF: Which is a little scare Ð I have had conversations with people that sometimes we need to be specialized, but then especially for clinicians, a lot of clinicians in hospitals are so specialized, but then we expect clinicians out in the community to be able to treat all of it. That's when you use your resources. You reach out to therapists that maybe are specializing in an area, or have a lot of experience and get the support, because I find 99% of the time, our community does want to support each other, because we just want to help the kids that we're working with. 1% of the time you make it somebody that doesn't want to, and that's fine.

[0:58:14] MD: Maybe they're having a bad day.

[0:58:17] EF: Exactly. Most of the time, you're going to have someone that wants to support and wants to share their knowledge and wants to grow that. That can be helpful.

[0:58:27] MD: Yes. Okay. If you don't have access to that IPP team, there are resources available within our greater PFD community, so that the families can get their little ones to a major children's hospital where cohesive diagnostic work up. While they are not going to probably be responsible for the ongoing therapy ourselves as the community-based clinicians will do the therapy, we can still get a consent to release information signed and reach out to them. Because oftentimes, those settings monitor once every six months, or once a year, like face to face. It's us doing the work, but we can still hold those conversations and work collaboratively.

Then I will go back to Dr. Jean Marshall and, oh my gosh, what is her counterpart there in Australia? We've had her on the podcast, too. She came on talking teletherapy. She took out her PhD, bloody freaking help. It's going to drive me crazy. Anyways, I'm sorry, I can see your face. Madeline, Madeline. It's gone, but it's Dr. Madeline, but the two of them have a ton of research about doing and engaging in teletherapy for dysphagia and PFD. It's robust, because it's through Queensland University. I mean, there's so much support materials.

If you are a rural clinician and you're trying to help the masses, but you can't physically drive there, there's ways to go about this and engage in it ethically in a IPP perspective with subject matter experts and physicians farther away, as well as supporting your more rural patients and clients that are in need, too. There is hope, bottom line. There's always hope. Oh, my gosh. Okay, there was something else. Oh, we want to say thank you. I'm trying to be respectful of our hour-long timeline. But Erin and I just caught the stats last week, no, two weeks ago and got the update that y'all, we have touched over 1.5 million lives.

A year ago in June, we celebrated our 1 million download. This month, we hit 1.5 million. We are so grateful that you come on this journey with us that we're growing together. This has been one heck of a joyful ride. We have been stockpiling well into the fall and are officially recorded all the way through to October. Erin got a big promotion and I started a job in July. We wanted to make sure we were set for success. Go team. Thank you. Thank you. Thank you. Thank you for being a part of this.

If there's ever a topic that you want covered that we haven't covered, or a guest that you'd be interested in. Madeleine Ratz. Yes, Olivia, Madeleine Ratz, love her. Miriam, thank you. Yes. I knew itÕs Madeleine. Thank you. Madeleine Ratz. Oh, she's lovely. If there's ever a subject, or a topic, or a guest, let us know. Message us through First Bite Instagram. Join us for our new adventure where we bring the researchers directly to y'all on Instagram page. Erin, what have I forgotten?

[1:01:58] EF: I don't think anything.

[1:02:01] MD: Oh, we're doing the funsy one. Next week, she's coming. Yay. We're just going to record a non-CEU-based Ð what's going on in our world as a way to celebrate the 1.5 million. Stay tuned for that one. That one will have wine involved. But again, that one will cover a CEU. Go team. Yay. Okay. Enjoy Nashville, honey. Then let me know when you fly in, okay?

[1:02:29] EF: Mm-hmm.

[1:02:31] MD: Okay. Everybody on here, thank you, thank you, thank you. Thank you. Email me if you have questions. Olivia and Cassie, thank you so much for chiming in. If you guys need anything, just message us, okay? Happiest Sunday.

[1:02:44] EF: Bye.

[END OF EPISODE]

[1:02:47] ANNOUNCER: Feeding Matters guides system-wide changes by uniting caregivers, professionals and community partners under the Pediatric Feeding Disorder Alliance. What is this alliance? The alliance is an open access collaborative community, focused on achieving strategic goals within three focus areas; education, advocacy and research.

Who is the Alliance? It's you. The Alliance is open to any person passionate about improving care for children with a pediatric feeding disorder. To date, a 187 professionals, caregivers and partners have joined the alliance. You can join today by visiting the Feeding Matters website at www.feedingmatters.org. Click on PFD Alliance tab and sign up today. Change is possible when we work together.

[1:03:40] MD: That's a wrap folks. Once again, thank you for listening to First Bite: Fed, Fun and Functional. I'm your humble, but yet, sassy host, Michelle Dawson, the All-Things PFDs SLP.

This podcast is part of a course offered for continuing education through speechtherapypd.com. Please check out the website if you'd like to learn more about CEU opportunities for this episode, as well as the ones that are archived. As always, remember, feed your mind, feed your soul, be kind and feed those babies.

[DISCLOSURE]

[1:04:27] MD: Hey, this is Michelle Dawson, and I need to update my disclosure statements. My non-financial disclosures. I actively volunteer with Feeding Matters, National Foundation of Swallowing Disorders, NFOSD, Dysphagia Outreach Project, DOP. I am a former treasurer with the Council of State Association Presidents, CSAP, a past president of the South Carolina Speech Language and Hearing Association, SCPHA, a current board of trustees member with the Communication Disorders Foundation of Virginia. I am a current member of ASHA, ASHA SIG13, SCPHA, the Speech Language Hearing Association of Virginia, SHAV, a member of the National Black Speech Language Hearing Association in NABSLHA, and Dysphagia Research Society, DRS.

Additionally, I volunteer with ASHA as the topic chair for the Pediatric Feeding Disorder Planning Committee for the ASHA 2023 Convention in Boston, and I hope you make it out there.

My financial disclosures include receiving compensation for First Bite Podcast from speechtherapypd.com, as well as from additional webinars and for webinars associated with Understanding Dysphagia, which is also a podcast with speechtherapypd.com. I currently receive a salary from the University of South Carolina in my work as adjunct professor and student services coordinator, and I receive royalties from the sale of my book, Chasing the Swallow: Truth, Science and Hope for Pediatric Feeding and Swallowing Disorders, as well as compensation for the CEUs associated with it from speechtherapypd.com. Those are my current disclosure statements. Thanks, guys.

[1:06:25] EF: The views and opinions expressed in today's podcast do not reflect the organizations associated with the speakers and are their views and opinions solely.

[END]
FBP 237		Transcript

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